HEWSON, Mr Dean, Digital Health Adviser, Consumers Health Forum of Australia

WELLS, Ms Leanne, Chief Executive Officer, Consumers Health Forum of Australia

[16:27]

CHAIR: Welcome. Can I double-check that you've both been given information on parliamentary privilege and the protection of witnesses and evidence?

Ms Wells : We have, thank you.

CHAIR: We have your submission. Thank you very much. I'd like to invite you to make an opening statement, and then we'll ask you some questions.

Ms Wells : Thank you for the opportunity to appear before this inquiry on My Health Record. The Consumers Health Forum of Australia is the national peak body representing Australian healthcare consumers and those with an interest in healthcare consumer affairs. Our membership is very diverse.

Our prime concern in this debate is that all Australians have access to a world-class health system that is accessible and affordable. And, in considering the terms of reference of this inquiry and the events following the announcement of the opt-out period, CHF believes it is important to stay focused on why it is that Australia has moved to implement this major health system reform. An electronic health record which will enable key health information to be controlled by the consumer and shared with consent with providers involved in their care has long been identified as a measure that would improve healthcare delivery. It was recommended by the National Health and Hospitals Reform Commission and, more recently, by several primary health care reviews, including the Primary Health Care Advisory Group in 2015. At CHF, we've consistently found a common experience of the health system is one of fragmentation, poorly coordinated care and less than adequate communication between providers. And this becomes a great concern when people are moving between settings, such as moving from hospital to aged care or from hospital to home, when we know there is a risk of adverse events, and poor and, often, costly transitional care can occur. Australians pay proportionately more for health care out of their own pockets than their counterparts in similar OECD countries. Unnecessary duplicate tests can contribute greatly to out-of-pocket expenses and to waste within our system, which ultimately costs the taxpayer. Those are just two things that My Health Record, we believe, can help address.

So it's a reform that is long overdue. We want to see an integrated, connected health system that puts people at the centre. My Health Record should be first and foremost a tool for improving the efficiency and effectiveness of patient centred care. So focusing on its implementation and uptake is now the main game. That's not to say that we shouldn't seek improvements to the system over time and as they are warranted. While there may be critics with very real concerns about My Health Record, there are also many patients and doctors who support My Health Record because they recognise the practical, day-to-day benefits in terms of efficiency, safety and quality. For every genuine concern, we hear several stories of people having positive experiences, those who have already opted in with My Health Record and being thankful that it is there: the mother keeping better track of her children's immunisations; the person on several medications with allergies presenting to hospitals and having their information in the one spot; the traveller in need of health care when interstate without their records. So we believe we've reached a critical point in the rollout of the electronic health record system, where a balanced assessment by clinicians and patients who are using it suggests that the overall benefit to the community outweighs concerns about potential privacy and security breaches.

I just want to make three other brief points. Firstly on privacy: we would argue that My Health Record is a change comparable in scale to the introduction of Medicare. Widespread community trust in the effectiveness and integrity of it is critical. The community expects due diligence and vigilance by legislators and the system operator when it comes to privacy safeguards and accountability and transparency in those safeguards. We commend the government's response to concerns about release to law enforcement and other agencies without a warrant. We advocated for those legislative changes to ensure that no My Health Record could be released to police for any purpose without a court order. We also support measures and steps to change the legislation to ensure that if any Australian wishes to cancel their record, they can do so permanently with the record deleted from the system.

Secondly, the public information campaign. The Australian Digital Health Agency is implementing a communication campaign and I believe has taken on board feedback from ourselves, the AMA and the RACGP that it needs to be boosted with more awareness. More recently we have contributed to that effort ourselves by hosting a series of live stream webinars. We hear a diversity of opinion across our constituency and the community about the merits of My Health Record. We are very, very aware of people with conditions such as HIV AIDS and mental health problems. They are understandably giving some deep thought to the record and whether it is right for them. So we've taken a position at CHF that we have not insisted or implored or suggested that all Australians should have a record. Rather, we've said that we see a number of obvious beneficiaries, but everyone needs to weigh up the benefits for themselves and make the right choice. So for this reason our webinar panellists have been chosen to speak to the pros and the cons of My Health Record to present all sides of the story.

We'd make two key observations about the public communication around My Health Record. Utility will depend on uptake, and this will come from patients being sold on the idea. We believe the scope to do that is greatest at the point of care delivery, when patients are in front of their GP or being discharged from hospital, where they're more likely to see the practical benefits and have them explained to them by someone who is trusted. There is clearly heightened community awareness of the risk of data breaches. We've consistently recommended that a letter go to all households outlining the benefits and explaining the privacy safeguards in frank, plain language.

Finally, we believe there is a place for secondary use of de-identified—that's a key word—My Health Record data. On the whole, so do consumers. Our research shows that Australians want ownership and control of their own health data and want to give consent when it is used by governments, private companies and researchers. The same research also found that consumers are more likely to give permission if they understand how their data will be used and the benefits that will come from its use. There is a level of comfort among the majority of consumers in data being used to support health providers to improve care or make better policy. But consumers are significantly less willing to share their data if it's to be used for commercial gain. So we were pleased to see that use for commercial gain was ruled out in the framework to guide secondary use of My Health Record data. However, our concern now is that the playing field has changed. The framework for secondary use is good; however, it was released in a pre-opt-out environment prior to privacy concerns reaching ahead. So we'd suggest, in the same way that some aspects of the privacy policy now before the parliament be protected by legislation, that there may be an argument to also legislate the conditions that will govern secondary use, and not just leave that to policy.

Senator GICHUHI: What do you see are the main benefits to the consumers of My Health Record and to opt-out compared to opt-in?

Ms Wells : I think the main benefits to the consumer are day-to-day practical benefits. I heard My Health Record described as a personal health drop box. That is a nice analogy. To be able to have critical information about yourself, or for your carer to have that information in the one spot—immunisations, allergies, medications, shared summaries, test results—we see that very much as a benefit and one that you can control who it's shared with in your care team. We think there are wider system benefits as well, but I think I elaborated on those in my opening remarks. The shift to opt-out has been hotly debated, as we know. In our submission to the Royle review in 2013 we supported that shift on balance, because we were concerned that if My Health Record remained opt-in, it would have limited uptake. We would not have the critical mass of consumers and clinicians using it and the benefits wouldn't be realised.

Senator MARTIN: Just talking about certain situations where My Health Record might benefit patients—if a patient arrives in an emergency situation suffering from trauma et cetera and was unconscious, that would be one example. The other example would be where a patient has complex conditions and they're unaccompanied. What do the you think would be the benefit of My Health Record in regard to those two situations?

Ms Wells : If you're talking about people with multiple, complex and chronic conditions, they are, by definition of their condition, going to have a lot of people involved in their treatment team. The chances are they're going to be on a lot of medications. If they're transient, they'll be seeing doctors in different settings in different towns. If they're older Australians they may be retired and moving around. That's a really practical, fundamental benefit of having all that information there with the assurance that's it's there when you need it or when a carer needs to refer to it. A GP that you might be seeing in another town, for whatever reason, can access that information with your consent. Emergency departments are obviously highly charged situations. There's a provision in the way the system's designed, even if there hasn't been consent given to providers, to break glass as I think the expression is. That can be potentially life-saving in those sorts of situations.

Senator MARTIN: In today's world, taking sport for instance, with the Australian Football League or the premier soccer leagues and netball travelling all around the country and playing at different venues, it could be of benefit.

Ms Wells : Yes. You can imagine a number of scenarios like that where it would be beneficial.

Senator DI NATALE: Can I be clear on CHF's position on default settings around protection via a PIN or some sort of personal access code. Does CHF support that being the default setting, that every record be protected by a PIN, rather than at the moment that being an opt-in feature?

Ms Wells : Thank you for that question. We can appreciate both sides of the argument there, particularly the extra protection that a PIN might bring for people who have stigmatising conditions. For now we are quietly confident, shall we say, that there are enough features in the privacy and protections and penalties and sanctions within the current legislation that most people should have confidence in that. I think the key is how that's conveyed and communicated to people. But I think we should never say never. If there's mounting community concern that continues to progress around privacy and security, then we wouldn't be negative to that being looked at. But we would equally be concerned and would want to drill down to consider, if a PIN was put on by default, what effect that would have on utility. Would it frustrate people to have yet another PIN to remember when we all have so many we have to remember? Would it frustrate clinicians having to ask patients for it and patients have forgotten it? I think those sorts of considerations, which again are really practical, day-to-day ones, come into play as well. I guess our overriding view is that we've got to have a system that balances public trust and confidence in its protections with its use and utility.

Senator DI NATALE: In terms of the level of engagement you've had from among your members, obviously issues come up from time to time and become discussed publicly. I'm interested to know whether this is an issue that has exercised your members much. Or is it something that we've spoken about a bit here, but hasn't been a big concern from your membership?

Ms Wells : As I said at the outset, our membership is really diverse. For members like Diabetes Australia and those sorts of organisations that work with and represent people with chronic conditions, it doesn't seem to be a particularly hot issue for them. But then of course we have organisations who represent patients with HIV AIDS, sexually transmitted diseases, people who have mental health conditions, and they, quite rightfully, have been watching this debate quite closely and have engaged quite carefully and thoughtfully with us about their views on this. That is why we are pretty balanced in our approach to it. It is a very personal decision about whether this is right for you.

Senator DI NATALE: If you have an opt out, lets face it, most people won't even know about it. It's easy to have that theoretical framework that says, 'It's up to you,' but as we've heard from other people, a great number of people will have a medical record established for them and won't even know about it. With all the education in the world we can try and minimise that, but it will still happen. The question we're grappling with is, do we continue on with an opt-out model? Do we put a pause on that until we have a bit more confidence that we've got the settings right? I'm interested to hear your views on that. It sounds like you have what is probably a fairly nuanced view on those questions.

Ms Wells : We do have a nuanced view. Some of the legislative changes we're looking at at the moment—that delete means delete—we think will go a long way to reassuring people that there's additional privacy and protection in there. But we would also say in response to that that we would want to see the technical capability for that to be in place before a record is created. What does that mean for opt out? It may well mean that if the agency can't do that within the current opt-out period, a very real consideration is to extend the opt out. The other benefit of that is to nuance the education. It's one thing to promote community awareness. As you say, getting 100 per cent saturation is a challenge no matter what you're trying to communicate to the public, isn't it? When it's something arguably as complex as this, it's not only about education and awareness; it's about how we really and genuinely satisfy ourselves that people have, to use the jargon, the digital health skills and wherewithal to actually do what's intended and get in and manipulate the settings so they are quite customised to them.

Senator KENEALLY: Thank you for being here today. We've heard reports about the ADHA entering into contracts with various organisations. Has the Consumers Health Forum taken any money from or signed any contracts with the ADHA?

Ms Wells : We have. We outlined those in our submission, but I can tell you about those now. We've had three contracts with the agency. One was for us to have some staff capacity within our organisation to engage and support consumers that are involved as advisors on agency committees. The other one was to run, not directly related to My Health Record, but to run a digital health round table to look at the way in which some of the digital test bed sites under the National Digital Health Strategy should be implemented—what sorts of practical considerations, from a consumer perspective, should be taken into account in their design. The last one was to run the webinar series that I spoke about. I would also add that we've had full editorial licence and no interference by the agency in the content of those webinars. We've had agency participation as a range of panellists. We also have, at our insistence mainly, an MOU with the agency that explicitly recognises, among other things, our independence as a consumer peak body.

Senator KENEALLY: On the first point, you said you had some of your staff seconded to the agency?

Ms Wells : No. We have a digital health adviser sitting next to me here. We use funding from the agency to employ Dean. Part of his role is to work with and support a whole team of consumer advisers or consumer advocates that are part of the Digital Health Agency's governance and advisory structures. There's a medication committee and the pathology committee. Our job is to equip them with the information and advice and some of the wider insights from the consumer community that they need to know about or that would be useful for them to know about in order to participate in those discussions within agency committee environments.

Senator KENEALLY: I'm only asking this out of a sense of trying to understand the relationship between the Consumers Health Forum and the agency. Had you reached a view on the My Health Record before you entered into these contractual arrangements?

Ms Wells : Yes.

Senator KENEALLY: What was that view?

Ms Wells : As I said in my opening remarks, we supported opt out in the response we made to the Royle review. We support the system asset and the benefits to consumers that a My Health Record brings to both individuals and the system. That's been a longstanding policy position of CHF. Our first contract with the agency commenced in December last year.

Senator KENEALLY: When you say you support opt out, does that mean you support the shift to an opt-out system?

Ms Wells : Correct.

Senator KENEALLY: I'm happy for you to take this on notice, but could you provide us with the quantum of funding for each of those three initiatives that you've outlined here—the staffing, the digital health round table and the webinar series?

Ms Wells : We itemised those in our submission. If that's satisfactory, we can leave that with you.

Senator KENEALLY: I'll have a look at the submission. I apologise—I've been caught up with a few other things today. You have said in your submission, as well in other forums, that consumer trust and confidence in the My Health Record is essential. You said that kind of thing here today. Do you agree that trust and confidence has been damaged in the community over the past few months?

Ms Wells : I think it is fair to say it has been eroded. We expressed that in our submission. It was unfortunate that the public discourse and the effort around introducing the opt-out period was subsumed by quite a lot of debate and speculation about privacy and protections and whether they were adequate. Again, with a nuanced message those sorts of concerns absolutely had to be rebutted. Any misinformation had to be expelled. But equally, the fact that they arose when the opt-out period was announced is indicative that that was a concern in the community. It's a genuine and real concern that needs to be taken into account as the agency and the government create the social licence for this to continue to embed.

Senator KENEALLY: Your organisation often does advocate for consumers to have more choice. Yet you seem to be quite comfortable to have the opt-out model. Some would argue that that actually gives Australians a reduced ability to make an informed choice, particularly given the short period of time and some of the confusion around how the system works.

Ms Wells : Yes, it is quite a sophisticated system. We would argue that a My Health Record that's well populated and the content of which is controlled by the consumer can facilitate more meaningful conversations between them and clinicians in terms of shared decision-making. It really does hinge on people being very equipped with the knowledge and skills they need to customise their record and the content of their record with the content that they're comfortable with and comfortable with sharing.

Senator KENEALLY: If that were part of it, do you think it would go some way to helping restore that trust and confidence that we just spoke about?

Ms Wells : If people were more equipped with knowledge? Yes, I think that would go a long way to restoring trust and confidence. I would hope that over time we will get there, that the agency and the government have an intention to shift us along the curve from just raising awareness of My Health Record and what it is to some appropriately targeted and designed education about how people can do that.

Senator KENEALLY: You have spoken about the need for a comprehensive public information campaign. I'm guessing you would argue that those sorts of messages need to be part of it—not just the fact that there is such a thing as an e-health record—

Ms Wells : Absolutely. What's the point in having it if it's not going to be used? Utility with this is going to be the critical success factor, the key measure of whether it's fulfilling its objectives. We've got to get patients comfortable with using it. We've got to get clinicians comfortable and confident with using it as well. There are good inroads there.

Senator KENEALLY: Do you think that the opt-out period should be extended until such a campaign can be undertaken?

Ms Wells : As I said before to Senator Di Natale, until things like the technical capacity for 'delete means delete' is in place, I think there's an argument to give consideration to extending the opt-out period, so that people know that they can make a decision to opt out. It's a matter of the agency being transparent about their tracking of how aware people are of the record and what their intention is. If there are indications that people do need more time to consider and weigh it up, then we wouldn't be negative to that.

Senator KENEALLY: I have two other questions that go to specific groups who are affected by the My Health Record. One, how do you respond to concerns that older Australians or those with lower levels of technological literacy may not be able to use the system effectively?

Ms Wells : I think it's a real concern. But we're dealing with a very segmented group—we also have some very technically savvy older Australians as well. Again it comes back to the education around it, and really practically demonstrating to people how they can use the controls, rather than just expecting people to go online and find that information. That can be a hurdle for people. Whereas others, if they are sat down and shown by a peer or a practice nurse or someone like that that you can do these things—if you press a few buttons here you can tailor it to yourself or suppress that record if you wish—some people respond so much better to being shown rather than just being told 'Go here to a link'.

Senator KENEALLY: But you do recognise that there are groups of Australians who will not easily be able to access the record and will need special assistance to be able to understand and manage it?

Ms Wells : We do recognise that, and we've consistently said that the digital divide in the community, if you could call it that, is a very real thing.

CHAIR: We need to go to a division for a few minutes, but we'll be back as soon as possible.

Proceedings suspended from 16:57 to 17:06

CHAIR: Senator Keneally, you had one more.

Senator KENEALLY: Apologies for the interruption. My other question was in relation to the opt-in and the changes to the current proposed My Health Record would have for 14- to18-year-olds. Are you familiar with concerns that have been raised that 14- to 18-year-olds will in fact lose some of the privacy they currently have under this system?

Ms Wells : Yes. It's not an issue we have been tracking particularly closely, but we do know there are many organisations that have raised issues in relation to that. So, obviously, we'd urge for those genuine issues to be addressed quickly and promptly. And the transition from the record being held by a parent to the young person's capacity to control and manage their own record is a big one and, clearly, who communicates that shift to them and what that means to them in terms of their control over their record. The implications of that are pretty profound, particularly, when talking about young people—they're going to be becoming more sexually active and all of those sorts of things come into play. They do need to be very well aware of the record, what it means for them and how they can exercise control, like any other members of the community.

Senator KENEALLY: It does seem rather odd that 14-year-olds before the electronic health record had privacy from their parents in terms of their health, their ability to have confidential conversations and health care, and to receive health care from doctors and hospitals. However, now, because we've moved to an electronic system, they're losing that privacy. You haven't had any submissions from parents, young people or youth groups?

Ms Wells : Not at CHF—no we haven't on that issue.

Senator KENEALLY: Thank you.

CHAIR: Thank you very much for your time today—very much appreciated.